Today (the 9th day of the 9th month, representing the nine months of pregnancy) is “International FASD Day”, so I felt compelled to write something about FASD (fetal alcohol spectrum disorder).
Each International FASD day brings with it a mix of feelings:
- Love of our son who has to live every day fighting to understand and to be understood
- Hope that the message is getting through to the mainstream that the difficulties our children have are entirely preventable and don’t need to be repeated in generations to come.
- Despair that a lack of understanding from professionals and press allows misinformation to precipitate.
- Frustration that the message “no alcohol, no risk” is being interpreted as a nanny state message that restricts freedom of choice, rather than as a recognition that nobody can predict how alcohol will affect an individual or the offspring growing inside them, so it’s safest to remove all risk rather than using guesswork.
The hardest thing about having a child with FASD is the second guessing.
As well as a diagnosis of FAS (fetal alcohol syndrome, one of the disorders on the FASD spectrum), our son has a diagnosis of sensory processing disorder (SPD) and another of attention deficit hyperactivity disorder (ADHD).
As I see it, when looking at his SPD and ADHD:
- They might have occurred regardless of alcohol intake whilst he was in the womb;
- They are a direct result of pre natal alcohol exposure; or
- Some combination of the above.
The problem is that we will never know which is the case, which complicates the approach we should use to support our son and mitigate these presentations.
428 conditions co-occur with FASD – who knows how many more we’ll encounter as we support our son?
He’s had a diagnosis of FAS since he was 2 years old, but it’s only now that the ADHD and SPD are coming through that professionals are taking notice – providing medication for ADHD (which seems to be still in the stressful, frustrating trial and error stage), and extra resources for the SPD.
The frustrating thing is that we’ve been asking for this help for ages, but lack of knowledge/understanding of FASD has meant that it’s only when the co-occurring conditions come through that we’ve got the help we’ve been pleading for.
It’s simply not good enough.
FASD is entirely avoidable and preventable. It’s also very real, and out there – the conservative estimates of 2% of babies are born with FASD are frankly 2% too many.
Families, friends, support networks, and most importantly, those with FASD need more.
We need more support and awareness of FASD from the professionals we ask for help.
We also need to support the decisions of women whilst providing more education about the possible effects of alcohol on an unborn child. Stigmatising anyone is counter productive.
We need to recognise that past advice (e.g. drinking stout for iron) was based on evidence available at the time and is outdated, whilst not laying the blame at anyone’s door.
There may not be enough evidence around the risk of consuming small amounts of alcohol whilst pregnant, but is it really worth the risk? Quite simply, no alcohol = no risk of FASD.
If enough is done then we could all but eradicate FASD for future generations, and provide vital support for those already affected.